I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu

Search This Blog

Sunday, February 19, 2012

Widespread Concerns about DSM-V

DSM 5 has suddenly become a star press attraction. In just the last three weeks, more than 100 news stories featuring DSM 5 appeared in major media outlets located in more than a dozen countries. (For a representative sample see Suzy Chapman's post on Dx Revision Watch.) The explosion of interest started with a flurry when The New York Times published two long DSM 5 articles and three DSM-5-related op-ed pieces, all within a few days. An unrelated press conference in London then generated a widely distributed Reuters story and also many independent pieces. Several other reporters had also been working on their own DSM 5 stories that just happened to arrive at the same time.

The intense press scrutiny of DSM 5 is really just beginning. I know of at least 10 additional reporters who are preparing their work now for publication in the near future. And many of the journalists whose articles appeared during these last few weeks intend to stay on this story for the duration -- at least until DSM 5 is published, and probably beyond. They understand that DSM 5 is a document of great individual and societal consequence -- and that its impact and risks need a thorough public airing.

According to [Fred] Volkmar's study, to be published in April in the Journal of the American Academy of Child and Adolescent Psychiatry and online later this month, about one-fourth of those diagnosed with autism would not meet the new criteria and nearly three-fourths of those with Asperger's also would not be diagnosed. Also, 84 percent of those diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified also would no longer meet the criteria.

"The point about collapsing everything into the autism spectrum disorder, I do think that makes sense because I don't think there's adequate evidence that there's a significant difference between them."

Fein said she has her doubts that the effect would be as dramatic as Volkmar's study suggests. "I think he was looking at a particular slice of the pie," she said.

"The population I'm most concerned about is toddlers."

A study that she recently worked on found that 20 percent to 25 percent of the toddlers currently diagnosed as having Autism Spectrum Disorder would not qualify under the new criteria. Many of these children would likely develop additional autism-related symptoms a few years later, as is common, and then meet the criteria.

But by that time, she said, they would have missed out on a few years of services, and early intervention is crucial in treating autism.

Parents and psychologists fear the changes to the diagnostic criteria are driven by an American government wanting to reduce the rate at which autism is diagnosed - now one in 100 - so as to reduce the cost of supporting services which help children with an autism spectrum disorder (ASD) fit into society, and the classroom.

Specialists don’t rely solely on the DSM to diagnose autism, adds Dr. [Vikram] Dua. Instead, they use a variety of assessment tools in multiple sessions with a patient to determine whether an individual has autism or a cluster of disorders with similar traits. In clinical practice, he says, “I don’t know if [the DSM-5] is going to change things too much.”

But Leah Miltchin, president of the board of directors for Autism Ontario, notes that in places where diagnostic services are less available, general practitioners turn to the DSM. “I’ve heard of people who have just taken their child to the family doctor and the family doctor says, ‘Oh yeah, he has PDD-NOS,’ and kind of sends them on their way.”

Ms. Miltchin says the onus will be on the medical community to be vigilant about applying the new diagnostic criteria – and on policy makers to “not just pick and choose who receives services and who doesn’t.”